Marco
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OMF, Ron Davis and James "DNA" Watson launch END ME/CFS Project
- Thread starter Sasha
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snowathlete
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Yes it does. Can't remember exact details but there is at least one paper I've seen showing evidence it does.
Also worth pointing out that effectively, ME/CFS patients are in the third world wherever they are as it's almost completely ignored.
Yes, it does, but I doubt that will sway them. When I was in Thailand and in Central America, docs told me they do have it there but don't know any more than the rest of the world about it. But they did not think it was "psychological", at least.
Snow Leopard
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Of course it does:
The Prevalence of Chronic Fatigue Syndrome in Nigeria
http://hpq.sagepub.com/content/12/3/461.short
etc
The problem is that the epidemiological studies are mostly of poor quality and so the true epidemiology in developing countries is unrecognised.
The Gates Foundation is interested in epidemiology in developing countries, but CFS was explicitly ignored in the big worldwide DALY study that they funded (the second international study, both organised by the WHO).
knackers323
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How do we get these people or someone similar involved then?
I suggested the Aussie philanthropist Dick Smith before but no one seem interested.
What are rich philanthropists are there?
Or celebrity's that have been touched by the illness?
Or we need a campain that shows how cfs effects children. People are more sympathetic towards children.
It would also be hard for anyone to say that a child who can't play with other kids is making it up or exaggerating or malingering.
The problem is non of us have the spare energy to give to set something up.
Where are the patients who have been lucky enough to recover and patients family's?
Someone who is able, needs to run the ball up for us.
The question is.
Who?
I suggested the Aussie philanthropist Dick Smith before but no one seem interested.
What are rich philanthropists are there?
Or celebrity's that have been touched by the illness?
Or we need a campain that shows how cfs effects children. People are more sympathetic towards children.
It would also be hard for anyone to say that a child who can't play with other kids is making it up or exaggerating or malingering.
The problem is non of us have the spare energy to give to set something up.
Where are the patients who have been lucky enough to recover and patients family's?
Someone who is able, needs to run the ball up for us.
The question is.
Who?
Snow Leopard
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James Watson cited Richard Branson as an example of a potential funder in his proposal for studying the biological responses to exercise............
Gingergrrl
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@Sasha I just watched the video and thank you for posting it. Ryan said his film premieres in Hollywood in two weeks and I was wondering if the general public (me) can buy a ticket to go or if by invitation only? How do I find out?
ETA: I just sent an e-mail to Ryan and his team to ask this question and also looked at the website for Grauman's Chinese Theatre (where it is supposed to premiere) but can't find any info. I really want to figure out if I am allowed to go and how to get tickets!
ETA: I just sent an e-mail to Ryan and his team to ask this question and also looked at the website for Grauman's Chinese Theatre (where it is supposed to premiere) but can't find any info. I really want to figure out if I am allowed to go and how to get tickets!
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Dreambirdie
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This is so great to hear. Thank you @Sasha for posting about it.
You'd think he'd have announced it on his FB page but I've never noticed anything. I googled "Forgotten Plague" "Chinese Theatre" and the search results come up with:
but when I click on the eventbrite.com link, it's not listed.
Anyway, one of us should start a new thread for it when it's finally announced - it will be big news! If you hear back from Ryan, please pass the info on. It would be great if you could go and report back!
Gingergrrl
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@Sasha I would love to go and happy to pay whatever it costs for charity assuming the general public is invited? I have searched everywhere but cannot find the info! If anyone finds it please let me know and I will post it if I find it or get a response.
I am thinking about calling Graumans Theatre but not sure if I will reach a live person this early and need to get ready for an appt.
I am thinking about calling Graumans Theatre but not sure if I will reach a live person this early and need to get ready for an appt.
Gingergrrl
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@Sasha I wanted to let you and everyone know that I was able to get tickets for me and my family to see Ryan's film and very excited about it! If anyone lives in LA and is interested in getting tickets, send me a PM and I can give you the info. The event will have a program and film showing and then a reception with the scientists. I am so proud to be able to attend this special event.
That's fantastic! I'm so excited for you. I wish we all could go!
Really looking forward to hearing about it.
catly
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That is wonderful @Gingergrrl I hope that you enjoy the movie, I'm anxious to hear your report on it. Unfortunately I'm on the wrong coast, but maybe they'll do something on the east coast soon.
Strawberry
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This is the whole reason I joined this forum. I actually won't mind now if I do get the CFS diagnosis, as I can be part of research.Wow!
You can almost feel the winds of change blowing. Things improving on multiple fronts for ME these days.
I had a chance to briefly meet Dr. Davis at this year's Stanford ME/CFS conference. To say I was impressed is an understatement. He is one of this country's most talented researchers and he is on a mission to make a dent in this field. His lab has a history of challenging the status quo and moving things forward. I am happy to hear this development.
His past accomplishments include developing the technology that led to the human genome project, among other things.
His past accomplishments include developing the technology that led to the human genome project, among other things.
I'm excited about the End ME/CFS project and think the scientific board looks great, with one exception... as previously mentioned, Watson is a very controversial figure, and I'm afraid his name won't lend credibility so much as the opposite for a lot of people...
I agree, Tuha, that is the big QUESTION! We need to get NIH to increase funding for ME 20x. I think it will take political action, taking the issue to Congress.
I agree, Tuha, that is the big QUESTION! We need to get NIH to increase funding for ME 20x. I think it will take political action, taking the issue to Congress.
Gingergrrl
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@Emma My experience at the one event I attended was that the average person was very impressed by Watson's name recognition and did not know a lot of the controversies about him (which I also didn't until I googled him due to reading about it in this thread.) He has a scientific legacy and connections in the field which will help the research IMO. They did not bring him on board for his political viewpoints and would not do anything which interferes with their mission which is to solve ME/CFS.
As far as the NIH funding the project, it will never happen until they make a big discovery that will lead Pharma to think there is money to be made. That is why we as a patient group need to fund this project and help get the word out. There will be a fundraising campaign starting soon and the average person can sign up to give a recurring gift next year of even $5 per month (which think what that could do if a million people did it!)
Bob
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I agree with @Gingergrrl that Watson's name is likely to add scientific prestige and unlikely to significantly detract from the project. (Just my opinion.) I'm still blissfully unaware of any controversies surrounding his name. And, to be honest, I didn't even know he was still alive, before he joined this scientific advisory board.
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